Demonstrate knowledge and ability to recognize patterns of decline associated with the dying process including:
- sudden death
- steady decline (some cancers)
- stuttering decline (organ failure)
- slow decline (dementia and frailty)
https://www.clpna.com/wp-content/uploads/2013/02/doc_Competency_Profile_for_LPNs_3rd_Ed_P_Palliative.pdf
— Ika Syamsul Huda MZ, MD, MPH (@drikasyamsul) July 12, 2021
The aftermath
☛ Infection, sepsis often viewed as acute problems
☛ Chronically ill patients do not return to normal when infection is “fixed”.
- On average, elderly sepsis survivors have 1.5 new functional limitations, compared to their pre-sepsis baseline
- Especially in elderly, decreased functional status, increased reliance on caregivers, more medications for more problems = more side effects
Serious health-related suffering (SHS) Suffering
is health-related when it is associated with illness or injury of any
kind. Suffering is serious when it cannot be relieved without
professional intervention and when it compromises physical, social,
spiritual, and/or emotional functioning.
https://pallipedia.org/serious-health-related-suffering-shs/
Serious illness A
condition that carries a high risk of mortality, negatively impacts
quality of life and daily function, and/or is burdensome in symptoms,
treatments, or caregiver stress. Serious illness can also be referred to
as severe illness.
https://pallipedia.org/serious-illness/
END-OF-LIFE CARE
End-of-life care decisions are very personal
and related to the culture
in which people age.
It is important
that those providing services
to people at the end of their lives
be knowledgeable
and sensitive
to the wishes
of the care receiver.
HOSPICE
In addition to providing needed care for people,
hospice programs also offer
respite,
support,
and guidance for caregivers.
The goal of hospice is
to give people the ability
to enjoy the time
they have remaining
and create meaningful memories
with their friends
and families.
Hospice programs
also provide bereavement support
to spouses,
children
and other friends
and family.
Misconceptions
- Palliative care is hospice
- Cancer patient’s symptoms are always addressed and managed
- Cancer patients don’t want to hear about prognosis and treatment options
- Cancer patients want to die in the hospital or ICU
Intensity of Care at End of Life
- ☛ Intensive care unit stays longer than a week in the last six months of life are increasing; 12.5% in 1996, 20.3% in 2007.
- ☛ Almost a third of Californians see 10 physicians in the last 6 months of life.
- ☛ 41% of Medicare patients with advanced directives entered palliative care/hospice care compared to 24% of those without advanced care planning.
- ☛ For certain terminally ill patients, those who choose hospice care live an average of 29 days longer than those who do not choose hospice.
- ☛ Hospice care reduced Medicare costs during the last year of life by an average of $2,309 per patient.
In what ways do patients and caregivers say the current health care system is NOT meeting the needs of patients with serious illness?
➔ Medicine, doctor’s visits, health insurance and out of pocket costs are too expensive
➔ There needs to be more affordable options for home assistance/home care
➔ The health care system is working for the for profit/business industry and not for patients
➔ The cost of healthcare is particularly devastating to the elderly
➔ Seriously ill patients too often receive limited care and options for their care
➔ Doctors have too many patients so can’t provide the focus and care that patients need
➔ Doctors need to better understand patients’ needs
https://www.betterhealth.vic.gov.au/health/servicesandsupport/end-of-life-and-palliative-care-explained
- 1. End of life and palliative care helps improve the quality of life for someone who has a life-limiting illness, by offering services, advice, information, referral and support.
- 2. End of life and palliative care offers emotional and practical support to families, friends and carers.
- 3. Palliative care is
not just for people nearing the end of their lives.- 4. You can receive palliative care at the same time as other treatment for particular conditions.
- 5. End of life and palliative care in Victoria is based on person-centred care, which means you and your family are treated in the way you want to be treated.
- 6. Palliative care can help you plan your care including using an advance care plan.
- 7. Any person can make a referral for themselves or someone else to palliative care.
Your palliative care plan is designed to fit your life and needs. It may include elements such as:
- Symptom management. Your palliative care plan will include steps to address your symptoms and improve your comfort and well-being. The care team will answer questions you may have, such as whether your pain medicines will affect treatments you're receiving from your primary care doctor.
- Support and advice. Palliative care services include support for the many difficult situations and decisions you and your family make when you're facing a serious illness or approaching the end of life.
- You and your family may talk with a palliative care social worker, chaplain or other team member about stress, spiritual questions, financial concerns or how your family will cope if a loved one dies. The palliative care specialists may offer guidance or connect you with community resources.
- Care techniques that improve your comfort and sense of well-being. These may include breathing techniques, healing touch, visualization or simply listening to music with headphones.
- Referrals. Your palliative care clinician may refer you to other doctors: for example, specialists in psychiatry, pain medicine or integrative medicine.
- Advance care planning. A palliative care team member can talk with you about goals and wishes for your care. This information could then be used to help you develop a living will, advance directive and a health care power of attorney. Your palliative care team collaborates with your regular doctors to ensure your care is well-coordinated.
Nurses can help patients more accurately report their pain by using these very specific PQRST assessment questions:
Patient education provided and the patient’s response to learning. Don’t write “patient understands” without a supportive evaluation such as patient can verbalize, demonstrate, describe, etc.
- P = Provocation/Palliation
- Q = Quality/Quantity
- R = Region/Radiation
- S = Severity Scale
- T = Timing
https://www.crozerkeystone.org/nurses/pqrst/
To organize our review, we use a communication and decision-making framework consisting of the following components: identifying
patients at high risk of dying who need to have a discussion about
goals of care; information exchange (regarding prognosis, values, and
the risks and expected outcomes of various treatment options); and
reaching a decision through discussion and deliberation.
https://www.cmaj.ca/content/186/6/425
The Global Atlas of Palliative Care, 2014 enumerates three levels (palliative care approach and general and specialist palliative care) at which palliative care should be delivered.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4332140/
Here you can find helpful information on
Hospice, Palliative Care, Advance care Planning and other important
topics to offer guidance for patients of all ages and those caring for
them.
https://www.uclahealth.org/palliative-care/resources
Both palliative care and hospice care provide comfort. But
palliative care can begin at diagnosis, and at the same time as
treatment. Hospice care begins after treatment of the disease is stopped
and when it is clear that the person is not going to survive the
illness. Hospice care is most often offered only when the person is expected to live 6 months or less.
https://medlineplus.gov/ency/patientinstructions/000536.htmHospice care is reserved for terminally ill patients when treatment is no longer curative during the last 6 months of life, assuming the disease takes its normal course.
Palliative care can be employed while the patient is continuing active treatment through different phases of their life limiting condition.https://www.hospicesect.org/hospice-and-palliative-care
Provision of palliative and hospice care to patients with limited prognoses has been shown to improve
patient and caregiver satisfaction, reduce healthcare utilization, and
decrease healthcare costs. In addition to providing symptom management,
improving patient and caregiver satisfaction, and reducing healthcare
costs, early integration of palliative care has been shown to increase
survival among patients with advanced cancer.
https://accesspharmacy.mhmedical.com/content.aspx?bookid=1861§ionid=146078092#1145218117
Many people mistakenly believe
that you can only receive palliative care when other treatments are no
longer possible. Actually, palliative care can be provided to people of
any age and at any stage of their illness. Providing
palliative care at an early stage in a person’s illness, for example,
while using therapies such as chemotherapy and radiation can help to
better manage symptoms and complications.
https://www.hse.ie/eng/about/who/cspd/ncps/palliative-care/
Across all the illness trajectories, it is important to identify and respond appropriately to deterioration of the resident caused by their primary diagnosis or as a result of other disease or events. However, it is important to distinguish between deterioration that is due to untreatable causes, such as disease progression or an acute or medical emergency that may warrant review and treatment.
Recognising deterioration can mean different things to different people including the:
- • person’s health is declining
- • person has months of life left
- • person is actively dying.
It is common to think of the terminal phase of care as being short (e.g., cancer) but for conditions like dementia and organ failure, it can extend over months or years. Signs of decline should be recorded so that care plans can be implemented or changed to meet needs.
https://www.eldac.com.au/tabid/5025/Default.aspxTransition of care:
1) place of care (e.g., hospital to home),
2) level of professions providing the care (e.g., acute care to hospice), and
3) goals of care (e.g., curative to palliative).
https://www.jpsmjournal.com/article/S0885-3924(13)00243-1/pdf
- Care should be based on the assessed needs of the patient, the carers or family and not solely on their diagnosis or other fixed criteria
- Care should be based on the assessed needs of people approaching the end of life, their carers and families, rather than on diagnosis, age or prognosis.
- Ensuring that all people who are at risk of unmet needs as they approach the end of life receive care in accordance with the use of validated assessment tools improves patient outcomes and experience.
The 2015 Institute of Medicine Report: Dying
in America: Improving Quality and Honoring Individual Preferences Near
the End of Life noted that while hospice care has now become mainstream,
there are still gaps in care at the end of life. Many
individuals are not engaged in thinking about and expressing their
preferences for end of life care. Systems established for curative care
are not well integrated with palliative and hospice care. The IOM
concluded that improving the care continuum could improve quality of
life for patients, reduce the use of unwanted services, and improve the
experience of patients and families.
https://www.elevatinghome.org/palliativecarecontinuumhttps://diigo.com/0hucdk
- "This Advance Decision (Living Will) pack contains an Advance Decision form and comprehensive guidance notes explaining everything you need to know to complete it.
- If you would prefer to create your Advance Decision online, visit our free and simple website. It guides you through the process step by step and lets you save your progress as you go."
Activities Handout
Activity 1
Instruct the group to turn to the person next to them and discuss:
- 1. What is palliative care? What is end of life care? Are they the same thing?
- 2. What have people asked you about death and the dying process?
- 3. What do you fear being asked about death and the dying process?
Bring the group back together and ask for people to share their thoughts. Respond and rectify incorrect commonly held beliefs.
http://cepn.barnetccg.nhs.uk/The most common health conditions addressed in palliative care include:
- Cancer
- Congestive heart failure (CHF)
- Kidney failure
- Liver failure
- Chronic obstructive pulmonary disease (COPD) or other lung diseases
- HIV/AIDS
- Spinal cord injuries
- Brain diseases such as stroke, ALS, or Parkinson’s
- Multiple sclerosis (MS)
- Alzheimer’s and other dementias
Start anti-secretory medication early as it does not remove secretions which have already accumulated in the airways.
As most patients are no longer alert at the time of the secretions, most physicians and nurses believe that they are usually not distressed by them. However, studies suggest that a moderately high degree of distress is experienced by the family.
Deep suctioning is certainly distressing for more alert patients, but even in patients who are no longer alert, suctioning may cause more secretions. Unless secretions are visible in the mouth, suctioning should be avoided.
Two of the most common medications used to treat secretions are both antimuscarinic anticholinergic agents: scopolamine and glycopyrrolate. Various sources quote a range of subcutaneous doses: scopolamine 0.2-0.6 mg q2-6h prn and glycopyrrolate 0.1-0.4mg q4-6h prn.
https://www.virtualhospice.ca/Understanding the symptom as part of the normal dying process may help reduce family members’ distress.
POLST How Hope Grows
Barriers to palliative care:
Doctors may be reluctant
to refer patients to palliative care
if they do not have an understanding
or belief in the discipline.
They may also be reluctant
to hand over care to another doctor
and unfortunately may also be guided by a fee
for service structure and concerns about loss of income.
The Australian national policy six guiding principles:
Palliative care is person-centred care
Death is a part of life
Carers are valued and receive the care they need
Care is accessible
Everyone has a role to play in palliative care
Care is high quality and evidence-based.
https://web.archive.org/web/20210707011052/https://www.palliaged.com.au/tabid/5629/Default.aspx
Okay kan, Bro!
IKA SYAMSUL HUDA MZ
